Abstract

Background: Advance care planning (ACP) was originally designed to promote autonomy and is commonly conceptualised as informing treatment and decisions in the event of a person’s loss of capacity. In the UK, healthcare policy has emphasised the potential for ACP to significantly contribute to improvements in experiences of death and dying for patients and their significant others. Older people with progressive frailty are at high risk of mortality, loss of capacity and increasing dependency on carers and care services, yet uptake of ACP in this group is poor. Little is known about whether frail older people regard advance care planning as relevant or what perspectives they have on decision making for the future.

Aim: To explore the expectations, experiences and understandings of frail older people and their significant others of planning for future care and to examine the implications of this for the practice of ACP.

Methods: The study adopted an exploratory case study design using serial qualitative interviews and the responsive interview technique. Frail older people and their nominated carers were recruited from hospital wards in a large University Hospital NHS Trust prior to discharge. They took part in up to two interviews either in hospital or in their homes. Within and cross-case qualitative analysis was undertaken.

Findings: Sixteen frail older people and eight significant others were recruited (Seventeen female, seven male, age range 70-96). The study found that frail older people experience profound uncertainty, associated with rapid changes to their physical and/or mental state and complex challenges in everyday life. Consequently, their attention is focused on day-to-day maintenance of quality of life, rather than on future care or advance decision making.

Many had difficulty imagining a future; as dependency grew, so did reliance on care services to support their needs. What once would have been deemed an unacceptable way of living became routine. For many, the care system offers a lifeline without which they would not be able to exist at home. However, it also appeared to offer little individual flexibility, meaning that frail older people struggled to assert the control over day-to-day decisions and choices that others take for granted. This increasing dependency and reliance on care and care services has the potential to undermine the decision-making capacity of frail older people. For many, autonomous choice and decision making gave way to relationships, partnerships and negotiations that are commensurate with a more relational model of autonomy.

Conclusion: The end-of-life orientation of current ACP policy and practice is at odds with the dynamic nature of frailty and does not correspond to individuals’ needs to maximise their current quality of life. The liberal ideal of autonomy as self-determination and self-interest presented by the legalistic and ideologically driven policy of ACP is out of step with the lived worlds of frail older people. For those facing increasing dependency on care and care services, frameworks that acknowledge a more relational approach when planning future care will be needed in order to engage this group of frail older people in ACP.